CPAP and Parkinson's Disease

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Liam1965
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CPAP and Parkinson's Disease

Post by Liam1965 » Thu Mar 26, 2009 11:28 am

Hi, Folks. Long time no chat...

My Dad has advanced Parkinson's Disease (technically, he has Progressive Supranuclear Palsy, which is an extremely aggressive form of Parkinson's) and he's having some trouble breathing at night and has been asking about my CPAP machine.

Since my recollection from when I was dealing with the doctors is that they don't really know CPAP very well except for the sleep specialists, I thought I'd check in and see if anyone here has had experience treating themselves or others with Parkinson's, or has any good sources of information on the benefits and perils of CPAP for Parkinson's patients.

Thanks for anything you can give me!

Liam, who had begun to think his CPAPTalk days were entirely behind him, but is glad to be back, however briefly.

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Re: CPAP and Parkinson's Disease

Post by -SWS » Thu Mar 26, 2009 12:18 pm

Liam, good to see you... but not under the circumstances.

No first-hand knowledge, but I can see in Google Scholar that Parkinson's is sometimes used with CPAP or BiLevel:
http://scholar.google.com/scholar?q=par ... =en&tab=ws
-and-
http://scholar.google.com/scholar?hl=en ... tnG=Search

I haven't delved into any of those articles---just a cursory skim or two. But I get the impression that it's beneficial for Parkinson's patients to treat underlying sleep disorders such as apnea with CPAP or BiLevel. Then it also seems that CPAP or especially BiLevel can be employed to help with the neuromuscular work of breathing itself.

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Re: CPAP and Parkinson's Disease

Post by Liam1965 » Thu Mar 26, 2009 12:31 pm

Thanks, -SWS, good to see you're still about.

My concern is that my Dad is getting very curmudgeonly as this progresses, and so he's making a lot of decisions for himself that he really should be seeking a doctor's care for. He's managed to find a friend who has an old machine (coincidentally, I believe it's the same model I once used, which at least gives me some familiarity with the machine in question) and he's wanting to borrow it and try it out, and while I'm not a big fan of people taking their medical decisions without the proper consultations, saying THAT isn't going to make any headway with my Dad.

So instead, I'm trying to do some research into this and find out if there are any cautions or gotchas to watch out for. For example, whether pressure-induced central apneas are a bigger problem with PSP/Parkinson's, etc, because if I bring him proof that it could be actually DANGEROUS, I might manage to convince him to consult his doctor, while if I simply try to tell him to see his doctor, he'll just brush it off.

And at worst, if he still won't go see the doctor but persists in his plan to try this out, I can at least try to be aware of the worst of the pitfalls and landmines and try to help my Mom be aware of them so she can be on the lookout.

Thanks for the info, and good to see you again, -SWS.

Liam, who finds "playing doctor" oddly less titillating than one might expect.

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Re: CPAP and Parkinson's Disease

Post by -SWS » Thu Mar 26, 2009 12:44 pm

I agree about dissuading your dad from playing amateur doctor with his Parkinson's breathing issues, Liam. A very wise decision IMHO.

Hope others here will have some advice or thoughts to share. A forum search didn't turn up much about Parkinson's. Good luck, friend!


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Re: CPAP and Parkinson's Disease

Post by ozij » Thu Mar 26, 2009 1:29 pm

Hi Liam - I hope things are well with you.

Would it help if you tried to tell your dad that he should, at the very least, use a machine that shows him his breathing data?

O. Who will always remember Liam as that funny guy who everybody loved and tried to help when she joined the forum.

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Re: CPAP and Parkinson's Disease

Post by Raj » Thu Mar 26, 2009 1:29 pm

Liam, I don't know if this might be useful for a person suffering from your father's particular condition, but Dr. Weil posted an interesting article about a possible very promising new treatment for Parkinson symptoms: http://www.drweil.com/drw/u/QAA400534/A ... nsons.html

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Re: CPAP and Parkinson's Disease

Post by Liam1965 » Thu Mar 26, 2009 1:33 pm

Thanks for the link, jnk.

I wrote a long e-mail to my Mom spelling out what I saw as the risks involved, and strongly advising that she push Dad to consult a sleep specialist, or at the very least, his PD specialist, trying to emphasize the risks to Dad of doing this wrong.

We'll see what happens.

Liam, who hopes his Dad will listen, but isn't holding his breath, because clearly on this site, that would be counter-productive.

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Re: CPAP and Parkinson's Disease

Post by Liam1965 » Thu Mar 26, 2009 1:38 pm

ozij, thanks for the suggestion. The good news is that the machine is the Remstar Auto, probably the same one that I had and that's still listed as my machine in my profile. I even somewhere have the software for reading the data and the card reader, so I could probably send that to him. Definitely a good suggestion!

And Raj, my Mom is a great fan of Dr. Weil, so she's probably seen that, but I'll read it over and pass it along to her as well. Thanks!

Liam, remembering fondly just how nice and helpful everyone here is, and then ruining the tender moment with yet another immature joke.

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Re: CPAP and Parkinson's Disease

Post by ozij » Thu Mar 26, 2009 1:50 pm

For what its worth:
http://www.pdf.org/en/winter03_04_Sleep

To Sleep, To Sleep, Perchance to Dream

Ivan M. Suzman

Only a minority of people with Parkinson's (PWP's) achieve refreshing, regular sleep patterns. Dr Cynthia Comella, M.D., a sleep specialist and Parkinson's expert at Rush-Presbyterian St. Luke's Medical Center in Chicago (a leading center supported by the Parkinson's Disease Foundation) estimates that as many as 70 percent of PWP's are vulnerable to episodes of sleep displacement and fragmentation.

Here are a few ideas that PWP's may consider to improve sleep quality.

Bed Linens Can Improve Mobility

Mrs. Bill L.W. Bird of Marcus, Iowa, recommends using a fitted satin bottom sheet, so that her husband can "slide around and turn over" more easily. Mrs. Bird located good sheets in the J.C. Penny mail-order catalogue at $39.00 for a set of two sheets and two pillow cases. I found some at http://www.carolwrightgifts.com, which cost just $24.95 for two sheets and $4.95 for two pillowcases. Mr. Nigel Harland of the United Kingdom adds that wearing satin boxer shorts can also increase bed mobility, especially rolling-over.

Mrs. Virginia Wilson of South Carolina states that her husband can see the edges of unmatched sheets or pillow cases better than matched ones and thus grasp them more quickly when he needs to shift them around. Her card ends, "forget matching and go complementary!"

I enjoy adding an electric blanket to the top covers, which I limit to the sheet, the single blanket and a thinner, summer-weight spread. Toes are less likely to curl up, and sleep will come sooner, in a bed that has warm, easily movable top covers.

Preparing Yourself for Sleep

Meditation or bedside prayers help many people to prepare and soothe the spirit for sleep. You may also benefit from soaking in a warm bath, especially if you experience toe curls or calf-muscle cramps. Treat yourself by including your favorite bath salts (avoiding oil-based products that can make the bathtub slippery).

Naturally-decaffeinated teas that tend to relax the stomach may help you feel sleepy. A brand I personally enjoy is "Sleepytime" from Celestial Seasonings Herb Tea. A box of twenty teabags costs $2.79 at my local supermarket or $5.98 for two boxes online at http://www.celestialseasonings.com.

Create a Cozy Environment

In recent years, there has been a huge growth in the availability of pre-recorded music for relaxation. http://www.amazon.com lists hundreds of CDs that offer peaceful sounds, from the tranquil pinging of the harp to the gentle patter of rainfall. Three different models of "Sound Soothers" table-top speakers, pre-programmed with 20 different sounds - are available from "The Sharper Image" (http://www.sharperimage.com or (800) 344 - 4444, prices start at $69.95), bringing into your bedroom the serenity of the oceanside or a summer night.

Keeping an oft-read book next to your bed to help you drift back to sleep after a mid-night awakening is preferable to switching on the television which can be too stimulating.

Easily found at your local hardware store, a soft, ivory or light yellow night light, placed just outside the door of the bedroom, can illuminate the way to the nearest bathroom, while not being invasive. It's especially helpful if you experience visual illusions with too much darkness.

Timing Your Medications

Timing your medications to avoid nighttime 'wearing-off' is important because muscle rigidity is one of the symptoms of PD that can interfere with a good night's sleep. I suggest that each PWP work out the best possible dose times to avoid losing sleep. This becomes even more important as the disease progresses. Your neurologist and your caregivers can be of enormous help in monitoring your response to dosages and schedules.

One commonly prescribed medication has long been known to cause insomnia. For this reason, my neurologist advises that Eldepryl (selegiline) should be taken no later than noon, in most cases. Its half-life of 17 hours leaves some active medication in the system, which will continue to be converted - even beyond midnight - into a methamphetamine-like product. This process can disrupt sleep.

Snorers have special needs

Aggravated, loud nasal breathing can foil the most ardent attempts to sleeping quietly and comfortably. One possible remedy is to raise the upper body on pillows, or on a foam wedge, available from medical supply catalogues. There are three different heights for foam slants and they cost from $24.95 to $42.95 (see http://www.brucemedical.com).

Betty Copeland of Manhattan reports great success with nasal strips that dilate the nostrils and improve inhalation. She recommends the plain, cloth-like, tan strips that are available from BreatheRight, Inc. These can be found easily at most good drug stores. Or try http://www.cvs.com where they cost $5.49 for a dozen.
--------------------------------------------------------------------------------

http://www.pdf.org/en/sleep_disturbance
Sleep Disturbances
Most people with Parkinson’s find it difficult to sleep through the night. Rigid muscles, tremors or stiffness at night, or not being able to roll over in bed can all interfere with sleep, as can the frequent urge to urinate. In addition, many people with Parkinson’s experience vivid dreams or hallucinations and act out their dreams, violent nightmares, a problem called “REM sleep behavior disorder.” Recent research suggests that REM sleep behavior disorder sometimes begins even before motor symptoms are diagnosed in Parkinson’s.

Medicine, such as clonazepam, is available for this problem. For some people, an extra dose of anti-Parkinson medications or a sleeping medication can help alleviate sleep disturbances. In other cases, sleep disturbances may be caused by medical conditions not related to PD. For example, a disruption in breathing called sleep apnea can also interfere with sleep, and can be treated separately from PD. Getting a good night’s sleep is essential for people with Parkinson’s, so if you are having any of these symptoms you should discuss them with your doctor.

Not sleeping well at night often causes people with Parkinson’s to feel drowsy during the day. Anti-Parkinson medications and the disease itself can also contribute to excessive daytime sleepiness. A pattern of falling asleep suddenly for short periods of time, similar to narcolepsy, can interfere with daily life. Adjusting antiparkinson medications, or taking a stimulant during the day—under a doctor’s supervision, of course—may help alleviate sleepiness during the day.
The point being that the parkinson induce sleep disturbances are not necessarily those caused by sleep apnea.

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Re: CPAP and Parkinson's Disease

Post by Liam1965 » Thu Mar 26, 2009 1:56 pm

ozij wrote:The point being that the parkinson induce sleep disturbances are not necessarily those caused by sleep apnea.
I agree, but this discussion started (not on here, I mean the discussion with my Mom) because Mom noticed that Dad was snoring a lot more than he used to, and would sometimes stop breathing and then wake and snort and start again, which we all recognize as classic OSA symptoms.

I will pass along your links, because there was definitely some good information in there, but from my Mom's description, I have to agree with her that it sounds like he's definitely having some OSA symptoms as his disease progresses.

Liam, parenting his parents, teaching his teachers, and oddly, accenting his accents.

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Re: CPAP and Parkinson's Disease

Post by kteague » Thu Mar 26, 2009 5:32 pm

Hi Liam! Good to see you here. Sorry to hear of your father's issues with PD/SNP. My cousin's hubby had similar struggles several years ago, and she couldn't tell him anything! For your dad to be actively seeking a cpap for probable sleep apnea is huge - most family members have the opposite problem.

I don't have any technical information, just feeling that no matter what, life with untreated sleep apnea is a disadvantage. With PD being neurological, the last thing I would think these patients need is a lack of oxygen. Doing it safely and well informed is another issue. It will be interesting to watch this thread develop. What I'm wondering is if the area affected by PD is the same area that controls breathing, as in central apnea. (Seems I remember Snoredog referencing detailed articles about the different areas of the brain - that's twice on here today I've missed him.) Or if just to mitigate the risk one of the more sophisticated machines would have any advantage.

About a decade ago I took Sinemet for a few years for PLMD. Did a lot of reading on the Parkinson Foundation site and elsewhere and learned a lot about how to optimize the med's effect without increasing the dosage and how to maintain consistent results thru meal timing, content, and volume. I have since switched to the dopamaine agonists, side effects and all. Has your father experienced any of the behavioral side effects of dopamine meds, like addictive behaviors? My cousin's hubby did.

Sounds like your dad is a smart man and eager to take care of himself. Hopefully he'll also be reasonable. Let us know how things go.

Hey, didn't you have a little one a while back? Does that mean your wife gets a double dose of juvenile humor?

Kathy

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Re: CPAP and Parkinson's Disease

Post by Liam1965 » Thu Mar 26, 2009 6:35 pm

If by "a while back" you mean three and a half years ago, then yeah. He's a big little boy now. Diagnosed with autism, which is going to get me off on a side rant (for those not interested, skip down to where it says (/rant)) because anyone who has dealt with an autistic child should read this...

(rant)
This really frustrated me with the medical profession. When Liam (the younger, his actual name, mine is just short for "William") was diagnosed, he was considered about 18 months developmentally delayed. This was at about 30 months of age.

Janet did a whole lot of research on line and found out that in a significant (although not all, by any stretch) number of cases, the autism disorder is caused by a sensitivity to milk protein (casein) and wheat protein (gluten). We decided to try a GFCF (gluten-free, casein-free) diet, and within 48 hours he was much improved. That was in October, and the last time we had him re-checked, he'd made up significantly and is now about 8 months developmentally delayed. That means he's made up 10 months of development in 5 months. Smart kid.

The part that really frustrates me is when we went in to the doctor the next time, they commented on his great improvement, and we told them what we'd done, and the doctor said "Yeah, I've heard other parents tell me that". I was livid. Other parents have had luck with this, and you couldn't even be bothered to mention it as something we might try? Idiot!

So the point is, if you know of a family with an autistic child, try taking them off of milk (use soy or rice milk, fortified so the kid still gets vitamins and calcium) for a couple of weeks and then try the wheat. If he or she is like Liam, within 48 hours of taking the child off of the milk, they'll be a new child.

Case in point, we started Liam on rice milk on a Sunday afternoon. On Monday evening, I came home from work. When I came in, Liam was in the living room playing, as he often would be. I said "Hey, monkey!". Until this point, his reaction to this would be one of three: 1) look up and smile and go back to playing, 2) get up and come hug me and then go back to playing, 3) ignore me because he didn't notice me.

On this Monday, he looked up, said "Hi, Dad!", and then went back to his playing. He TALKED.

The thing is, apparently in kids like him, the casein acts almost like an opiate, which we now recognize, because many of the "autism symptoms" (the "stimming" and concentration on one thing to the exclusion of all else, for example) bear striking resemblance to the way drunk or high people act. It's pretty amazing to watch, now that we recognize it. If he gets some dairy products, he looks just like some of my friends in college who were stoned most of the time.

(/rant)

The PSP is extremely aggresive, my Dad doesn't get a whole lot of benefit from the PD medications at all, and in three years he's gone from leading hikes 2-4 times a week in the mountains of western NC to sitting in a wheel chair, unable to focus his eyes or concentrate very well. We don't have a lot of hope for treatment, but we would like to keep him comfortable, and he's hoping that if he treats his apnea, maybe he won't be quite as tired all the time.

Liam, who is, if he keeps typing these long rants, going to end up having to go to CarpelTunnelTalk.com.

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Re: CPAP and Parkinson's Disease

Post by kteague » Thu Mar 26, 2009 10:35 pm

wilLIAM,
Thanks for that enlightening information about (not so) little Liam's progress and how it was achieved. Having a doctor withhold potentially helpful information is quite rantworthy, so rant on! You'll never know how many may be helped by your information as surely many menbers have been touched by autism in their family or friends. I hope you've been reading while you are here. Have you run across the threads by or about our new member, Thomas McKean? He is an author and advocate for the cause of autism awareness. [Edit: After reading another thread i see you have.] Hope as time passes you drop back in to tell us of Liam's continued progress. May you and Janet see endless fruits of your diligent efforts as parents.

Kathy

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Re: CPAP and Parkinson's Disease

Post by chunkyfrog » Tue May 22, 2012 5:17 pm

oops wrong thread.

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